Maybe This is the Week

The bad news is that Avery’s feeding tube is back in. It’s not major step back, it’s simply a necessity since she isn’t eating enough to properly nourish herself. The good news is that there’s talk of Avery being released as soon as this Wednesday.

1I’ve been told that the most recent CT scans and x-rays look good. She’s finishing her final round of antibiotics, and she’s very aware and responsive. Apparently, she’s decided to celebrate by never sleeping. I graded essays from 7-9:30 last night in the cafeteria. I heard her familiar cries as soon as I entered the area where her room is.

Really long story short – she didn’t sleep until three in the morning and she got up as I left for work this morning. I don’t know what’s going on with her. She’s so clingy and she has no use for sleep. I asked a nurse this morning if this kind of behavior is common. “Every kid is different,” she said. “But Avery was OK the other night. But last night she didn’t want to sleep at all,” she continued.

Well, first thing’s first. I hope she is able to come home with us this week. It would be a nice treat on a three-day weekend. I’ll probably wait until then to write another update. Thank you all for continuing to keep Avery and our family in your thoughts and prayers. We’re in what we hope is the final leg of this insane journey.

The Troll Who Does Not Sleep

“Avery likes to be held, doesn’t she?” the nurses say as I saunter through the hospital hallways at 9:30 PM, the PITA Girl in my arms. “Do you?” I ask her. Our faces are inches apart, so she leans back to look at me. Her eyes are red and wet. Tears hang from her bulbous cheeks. She doesn’t answer. “Actually,” I say. I kiss Avery on the cheek. “I think it’s more that she hates being in that crib.” I continue down the long hall. “Also,” I whisper. “She hates me.” Avery neither confirms nor denies this statement.

12Earlier in the day Avery trolled me hard. I walked into her room where she and Mama were sitting quietly. A few minutes later, she handed Avery off. Avery let me know that she could tell the difference between her favorite singer and her least favorite father. When my mother-in-law emerged from the bathroom she offered to take Avery back. “No,” I said. “She gotta learn.”

For roughly 15 minutes I held Avery in my arms and she cried off and on. She would scream, then wind down into a whimper, then catch sight of her balloons and stop completely – then remember who was holding her before crying again. She wouldn’t let me sit down, not even to rock her. When Lynnette’s cousin Charleigh walked into the room Avery spotted her and leaned out towards her.”Has she been crying for a long time? Char asked. “Yeah,” I said. Avery pulled away from me and reached out both arms toward her aunty. “Oh, really?” I said.

Charleigh scooped her up and Avery immediately stopped crying. What the hell? I thought to myself. Charleigh laughed. “You’re so mean to your dad!” she said to Avery. Avery swiveled her head around and shot me the look captured in this photo. I thought that Avery would quickly realize that Char wasn’t Mama or Lynnette, and that she would resume crying. Nope. “Try sitting in the rocking chair,” I said. “Is she going to cry?” Char asked. “She did when I tried to sit in it,” I said. Char lowered herself into the rocker. Not a peep. She turned Avery around to face me and no crying. Avery stared right at me. Char laughed. “You really are a PITA Girl!” she said. In case you’re scoring at home, the list of people who hate me is as follows: Dragonite, the New York Mets, the workers at the Mililani Mauka McDonald’s who always put just the one patty in my Double Quarter Pounder with Cheese, and Avery.

3During the first two weeks of Avery’s stay in the “regular room”, she would sleep at 8 because of the medication she’d been on. This afforded me time to get work done. Well, since they’re weaning her off of that sweet, sweet sleep elixir, Avery’s had a much more difficult time sleeping. As in she doesn’t want to sleep at all. I have spent the last two nights trying bargaining, walking, begging, strolling, and begging again for her to sleep. She answers me with the same fussy whine. If I put her in the bed – even just to change her diaper, she transitions from that whine into a full blown I-am-being-murdered-by-my-father-who-love-Pokemon-more-than-me wail might stir sympathy in me if it wasn’t so damned over the top.

At 9 last night I strapped her into the stroller and she screamed the whole time until I rolled her outside. The crying stopped abruptly. I wheeled her down every corridor with the Pokemon Go app on so I could get some mileage on my eggs. But it didn’t work because GPS couldn’t find me in the walls of the hospital. For the record, I love Avery a little bit more than Pokemon. Anyway this era of good feeling lasted only 10 minutes before Avery started crying again. I took her out of the stroller and walked her instead. My right arm went dead in the bicep. Not enough curls for the girls growing up, I guess.

Mercifully at 10 PM one of the nurse’s aides took Avery from me and placed her in the stroller. “Go sleep” she said. “Are you sure?” I asked. She nodded. And so I wrapped myself up in the comforter atop my pullout seat/bed. I didn’t fall asleep immediately so I got to hear Avery being wheeled around the floor. I heard her screams then heard them fade until they disappeared. A few minutes later I would hear them again, they’d intensify, and then they’d be right outside the room door. I laughed in the dark. She was doing laps. I don’t know what time it was when she finally fell asleep.

I do know that it was 1 in the morning when she woke up screaming. I zombie walked toward her and rescued her from that horrible, horrible bed. I wrapped her in a blanket and fell into the rocking chair. She stopped crying. I kept rocking until I she began snoring. Pleasepleasepleaseplease. I thought as I rose out of the chair in slow-motion. I carried her back to the bed. I took a deep breath. Pleasepleasepleaseplease. I mouthed as I tilted her and put her back on the bed. She didn’t fuss. I threw two blankets on her and pat her leg for a minute.

It’s Back to School Night. I will be on campus until 8 PM. I know that Avery does not know this. But you can’t convince me that she doesn’t know this.

Six Weeks

Yesterday was the 6 week mark of Avery’s stay at Kapiolani. I would have written something then she made sure that I wasn’t able to do anything I wanted to (write this entry) or anything I didn’t want to do (grade essays) all night.

Avery usually falls asleep between 8 and 9 so I have some time to take care of business. Last night, however, she decided not to go to sleep until 10 – and that she wanted to be held every minute until then. I didn’t take my dress shoes off until 10. I didn’t shower until 10:15. When I turn the water off I could hear Avery screaming from her bed. I rushed out to calm her down. Fifteen minutes later I put her back in the bed but her eyes were still wide open. Luckily she didn’t cry. She just kind of stared at me through the dimly lit room.

This morning as I left for work Avery’s nurse told me that she threw up at 11 PM or so and that her feeding tube came out as well. He said she didn’t go back to sleep until 2 AM. This was news to me, but it wasn’t the first time I heard it. I think he tried to tell me about it as it was happening, but I was 3/4 asleep. I know he said something to me, that they had to take Avery into another room. I said OK. And that’s the last thing I remembered until this morning. I don’t know. I’m exhausted.

1Avery’s been fussy during the last week and I think that’s because she’s more aware of what’s happening and she wants to go home.

She despises her bed and if she even suspects any one of us is going to return her to it she throws a tantrum. She tracks hospital staff around her room and whines if they get too close to her. She screams if they touch her. It’s hard to blame her.

I’m also ready for this to be over. My mind is mush. I noticed that I’ve been zoning out on people in the middle of conversations. It’s harder for me to prevent pieces of my sarcasm and stupid sense of humor from seeping out. I miss my family.

It feels like we’re so close to taking her home. This past Sunday we had a training on how to use a pump to feed her when we leave the hospital. Avery’s on her last round of antibiotics. The doctors have been saying – but not promising – that maybe, hopefully she’ll be out on Sunday or Monday but those statements always end with “…so we’ll see.”

So. I guess we’ll see.

The Family That Plays Together

It’s been a tough week for Avery. We don’t know why she’s so hostile toward her bottle. We also don’t know why what she is eating is causing her digestive system so much grief. She feels so miserable that she cries if anyone puts her down and if someone carries her, but tilts her past a 45-degree angle. Yesterday was the first time she was able to sit without crying and the credit has to go to her twin brother.

12When Lynnette first sat on the floor Avery insisted on sitting in Lynnette’s lap. Mem tried to slide her off onto the mat, but Gravy wasn’t having it. I took all of the toys from Avery’s bed and laid them out on the mat. We were waiting for Cole.

Madison takes Cole on walks throughout the floor. When they returned to the room Madison brought Cole down to the floor level. All of the brightly colored toys caught his eye quickly and he reached for them before Madison had the chance to sit.

Cole has always been a toy thief. He’s made a career of scoping out the toy Avery’s playing with, then taking it from her. Perhaps Avery remembered this because she seemed to forget about her laps-only policy when Lynnette slid her to the mat. Cole and Avery sat a few feet apart, interacting through strange noises (mostly Cole) and glances of disdain (all Avery). They touched several times because both wanted to play the piano at the same time.

I don’t know why we didn’t think of this sooner, but I have not seen Avery’s spirits lifted so quickly by anyone else. Madison’s high-pitched Avery makes her smile, and Lynnette and Mama always calm her down. Still, I wonder what Avery sees when she looks at Cole. He’s such a simple, sweet boy, but when Avery looks at him, growls at him… something about Cole lights something inside of her.

Yesterday Lynnette propped Avery up on her legs and sang made-up lyrics to the Slippery Fish song like she always does to calm the twins.  But before she could finish her first verse, Cole crawled over to where the two were, then began to climb on Lynnette at Avery’s expense. Avery didn’t cry, though. She grunted and fought for her position. Cole seemed to bring out Avery’s competitive nature, the part that’s always been the strongest. That fire is why she’s always beat up Cole, trolled Cole so well, and it’s why she’s been able to fight, and is still fighting.

The Gyarados Incident

I had just returned to the hospital yesterday afternoon. I put my school bag down and took over holding Avery from my mother-in-law. She’s been really gassy and therefore fussy, so it took a few minutes for Avery to accept that one of her two favorite people would not be rocking her. A while later the nurse walked in to take Avery’s vitals. She fussed again and my mom-in-law scooped Avery away. “We’re going for a walk,” she said. OK. I reclined on my chair/bed and opened my phone. I saw Gyarados on the radar. He spawned on the corner of Kalakaua Avenue and Philip Street. I had 14 minutes to get there. The internal debate lasted for 20 seconds. I walked out of the hospital room and power walked down the hall.

123Once I made it out of the hospital I started running. My right hand clutched my phone, my left hand intermittently wiped sweat from my eyes. I was smiling the entire time.

hate running. I tolerated running during baseball practice all those years because I wanted to play in the games. It was a means. Once I stopped playing baseball I saw no reason to run. Ever. Now, you might be thinking that this attitude easily explains away the emergence of my gut and disappearance of my jaw, but the jury’s still out. We don’t know why those things happened. Perhaps in time science will explain it to me, to us.

But I digress.

I made it to the crosswalk at Beretania and caught what I thought was a weird look from an older woman. Why is a chubby Asian man in an aloha shirt, dress pants, and dress shoes running down Punahou Street while sweating profusely? Sorry, lady, I don’t have the time to explain the intricacies of a game you care nothing about. White walking man signal. Time to run.

I got down to the crosswalk on King Street and gave the head nod to two guys in construction long sleeve t-shirts eating outside of Subway because they stared at me as I jogged toward them. I wished one of them would have shouted “Get dat Pokemon!” because at least I would have known that they knew what I was doing – because that would have been better than the WTF? faces they shot my way.

I crossed King Street and ran past the Jack in the Box. My sweat glands were all “Whaaaaaaaaaat?” as they pumped actual sweat through my pores. You have to understand: sweating is the exact scenario I go out of my way to avoid EVERY SINGLE SECOND OF EVERY SINGLE DAY. I was doing this to myself on purpose, just for the shot at catching an AR Pokemon.

Gyarados finally popped up as I neared the Aloha Sub at the corner. As you can see, his CP was pretty underwhelming. It took a few tosses to catch him, and as I stood in the biggest slice of shade I could, a car drove by. “GYARADOS!” the driver shouted. We’re all in this together.

One of the silver linings I failed to mention in that recent post is that I’ve dramatically cut down on cigarettes. I haven’t bought a pack since May. I can count the times I’ve smoked since then on one hand. I mention this because I noticed that I wasn’t completely winded on the way back to the hospital. I don’t quite believe it myself, to be honest. When I got back to the hospital, my mother-in-law was back in the room with Avery. “Where did you go?” she asked. “Look for a Pokemon,” I said. “Oh,” she said. My comeuppance came about an hour later when I tried to get off of my couch/bed. My quads were super tight. My legs almost buckled. It was a foreign feeling. The craziest part of this whole incident is the fact that I already had a Gyarados and I still ran. I don’t even want to think about what I’d be capable of if Dragonite spawned in walking/running distance.

 

Silver Linings

Despite my need for contact lenses and occasional lapses that result in the wearing of only one of them, I like to think that I’m a pretty perceptive guy. I can read body language, between lines, and Lynnette’s passive-aggressive wifespeak. Alternately, I have a difficult time picking out silver lining because oh, my God, that storm cloud is so bleak and ominous. But I’m going to try anyway.

I would have preferred to live my entire life without having to experience anything like Avery’s ordeal, but since we’re here, we’ve had to make the most of it. The following is a list (in no particular order) of unintended consequences – positive ones – that have arisen from this terrible situation.

3*Daddy’s Quiet Time. Since I began spending weeknights in Avery’s room, I get about two hours a night of completely uninterrupted peace (you know, unless Avery decides to interrupt me). I use this time to grade work, watch wrestling with the sound off, and unwind. I’ve been getting to bed at about 9 PM and I have to say I feel pretty good throughout the day.

*Expanded Time With Lynnette. When Lynnette took off of work those first two weeks of Avery’s illness, those were two extra weeks we spent together. Obviously, the context was almost exclusively negative, but we spent a lot of time together in the van, in traffic, in waiting rooms, and in Avery’s room. Since there wasn’t a whole lot to do, we talked a lot. About everything. Usually, we’d only have the nights and weekends, and we’d feel the pressure to fill them with fun stuff, so conversations weren’t a huge priority. But during those first two weeks, there was no pressure. Neither of us was going to go anywhere. That time together made me wish neither of us ever had to work again. I miss you, Love.

1*Pokemon Go Exploring. Again, I am a 36-year old man and my two hobbies are watching professional wrestling and playing Pokemon. As attractive as that might might make me on the open market, I could never leave Lynnette because she understands how much I love this stuff. Once a weekend (twice if I’m super lucky!) Lynnette drives Madison and me into Kaka’ako for what Mad calls the “Poke Marathon”. Coral Street is lined with lured Poke Stops and we walk up and down hoping for rare and powerful Pokemon. Lynnette plays too, but she mostly comes along as a favor to us. This is the undisputed highlight of my week. Sleeping in my own bed on Friday nights is a close second.

*Getting to Know Town. Because we’ve spent so much time at the hospital (and because I’ve been driving to Kaka’ako and the Aquarium so damn much), I’ve attained a better understanding of the layout of town. I am Aiea born and raised, but moved out to Mililani when I got married. I only went into town to play baseball or to shop at Ala Moana. A conversation from two weeks ago:

Lynnette: Take Date down to McCully, then turn right.
Phil: What?
L: This is Date. Stay here. Now ride it all the way down to McCully.
P: OK. MADISON, ARE YOU GETTING ALL THE STOPS?
Madison: Yeah, dad!
L: No, this is Citron.
P: Sh*t.
L: It’s fine. Just keep going.
P: Wait. I know where we are. We’re by the WASHUUUUUUU!
L: What?
*We pull up near a building with a sign that features a character from a foreign language and the word “washuu”.
P: See! Washuuuuuuu!
L: Jesus.

I’ve grown since then. Also, living in town is awesome.

2*Extra Time With Cole and Madison. During Avery’s first two weeks in the PICU both Madison and Cole weren’t allowed in the room. While this wasn’t a problem when family members visited, it was something of a math issue when Lynnette and me went to the hospital. Only one of us could visit Avery at a time because the other had to watch the kids. This worked out for about a week until Cole started to realize that going to the hospital meant he’d be sitting around doing nothing for a few hours. Our plans morphed. I’d drop Lynnette off at the hospital, then take Madison and Cole some place in town. Yes, these places were always rife with lit Pokemon stops, but it was always a good time. Cole rolled around on a mat and picked at the grass. Madison got to wade in calf-deep water behind the aquarium. We went for snacks at Ala Moana. But my favorite part of every adventure like this was waiting until sunset. I’d take the two kids behind the aquarium and set them right up against the wall with the ocean and sun behind them. Every time, I’d try to snap a picture of them – even though I knew the shot would be back lit and horrible. Still, it seemed like a great thing to try for.

4*Alone Time with Gravy. I don’t blame my parents or in-laws for hovering around Avery. But between them, Avery’s other family members, the doctors and nurses, and Lynnette, it can be something of a challenge to make some quiet time with the Gravy Boat. But once people leave for the night and the nurses swing by to suction her at 8, it’s just me and an irate Avery. Last night she was so gassy that she was pulling off the impressive simultaneous cough/fart. It took me some time and a lot of Stevie Wonder to get her to calm down. When she finally fell asleep, I placed her in the crib. You know that scene in the first Mission: Impossible when Tom Cruise is suspended from the ceiling? You remember how tense that was? That’s what it’s like putting her down. I don’t want to screw it up. So when she’s finally down (because I lower her at a rate of 1 inch every 3 seconds), I take a huge, quiet step back. I hope her eyes don’t open. When I’m convinced she’s out, I take a shower. Two nights ago I got out of the shower to the sound her her crying. Last night, silence. I walked into the room and Avery was awake and staring at me. “What’s up?” I said. Nothing. “Can’t sleep?” I said. Nothing. I smiled. She smiled back. I stood next to the crib and slowly tapped one of her legs.

“Do you want to talk about the things you miss?” I asked her. She blinked slowly. “Okay,then,” I said. I continued tapping her leg.
“You must miss Abby, your favorite puppy. What about all your toys? Your fake chicken leg? You remember that? Cole likes the hamburger bun, but you like the drumstick, yeah? What about Cole’s dump truck? I’m a power dump truck! I rumble down the road, moving my load from here to there! Do you miss the DJ booth? What about the magical musical turtle? You know what? Mem moved out the mat with the magical musical turtle! You guys are too big for it already! I know! I was mad, too! Let’s scold Mem when she gets back tomorrow. Do you miss trying to climb on the couch? What about on the entertainment stand? I bet you do. When was the last time you stood up? Can you stand up with all the bulking you’ve done, Chubby Girl? Nahnahnah. I can’t wait to get you home because I miss you. I think Cole thinks he’s the boss of the house now. You have to come home and remind him who the greatest troll of all is, yeah? You miss Cole Boy? Me too…”

5 Weeks

“You guys have been here for a while,” the nurse said.
“Huh?” I muttered.
“She’s been in the hospital for a while,” the nurse said.
“Yeah. Today is five weeks,” I said.
“I saw her name before I went on vacation,” the nurse said.
“Oh yeah?” I said.
“That was three weeks ago,” the nurse said.
“Yeah,” I said.

1Avery’s been a wonderful roommate. She generally sleeps through the night. In fact, she’s only fussy when the nurses or respiratory therapists show up in the middle of the night to suction her or give her back rubs. Last night she was particularly angry after a suction treatment. I held her and bounced her around for a while. When she finally calmed down I placed her in  her crib. She bunched up all the blankets available to her and pulled them over her face. It’s seemed like this is her go-to tactic immediately following a suction treatment. Maybe she thinks hiding her face will prevent yet another tube from invading her nostril space. It’s not very effective but it’s super cute.

2There are bright signs of the old Avery. She smiles and laughs much more than she did even last week. I think that kind of visible progress makes me forget sometimes that her healing process is a tenuous proposition. Just today she’s been dealing with a stomach ache since the morning. It’s causing her discomfort and preventing her from eating. It’s two steps forward and a hey-no-so-fast step back. It’s maddening to be honest. It feels like we’re so close to having her come home.

Avery’s been upset all evening and I’m not Lynnette so Gravy makes me pay a spectacular price when she realizes her favorite person has left for the night and all she’s left with is me. I just put her to sleep by holding her in my arms and singing Steve Wonder’s “Ribbon in the Sky” over and over. I hope she sleeps through the night.

Thank you all so much for your continued support of our family. You’ve all been at our side every step of the way, and I can’t wait for the day when you get to read that we’ve taken the Gravy Boat home.